How would you rate yourself as a caregiver?

It’s been 12 years since my husband passed away from younger-onset Alzheimer’s disease. Even now ask myself if I could have done more for him. I still have guilt, even though I saw a therapist for the last three years of his life who said to me, “If a friend were telling you what you’re telling me, what would you say to her?”

I’d tell her, “You’re doing the best that you can.” My therapist nodded his head and reminded me that I was doing the very best that I knew how, and physically was able to.

I was pragmatic and philosophical about my husband’s Alzheimer’s. I was really good about taking him to his doctor appointments and utilizing every complementary healing modality that was available, such as acupuncture, massage, and even some pretty far-out techniques which I don’t even remember the name of. We hired gentle-touch practitioners, psychic healers, and astrologers. You name it. We tried them all. I even bought an expensive stress-reducing massage bed that emits infrared light and has jade balls that massage the spine by riding from the neck to the ankles.

Did these modalities help? I think so. They certainly helped reduce the stress that we both felt. Did they delay the symptoms of Alzheimer’s? Probably not, but my husband outlived his prognosis by two years, according to his doctor, so I have to believe that a good diet, nutritional supplements, and the support of loving friends and family played a huge role.

Yet, still, I think there were a few things I could have done better. I could have worked harder to acknowledge Morris’s reality. By that I mean I could have done a better job of redirecting him when he got anxious or worried. I realize that it’s easier to say this now, more than a decade after he died. But I wish I had more skill and practice in switching the topic from his obsession about having his car keys taken away, or his discomfort when I’d take him for a ride in the car and he’d complain about every bump in the road.

I wish I had shown him more affection by holding his hand or rubbing his shoulders. I actually told him one day at the breakfast table that I could not have an intimate physical relationship with him anymore because I felt more like his mother than his wife. This is a hard thing for me to admit, and I feel so sad that I said this to him. The reason I’m writing it here is to tell you that you don’t have to be 100% honest with what you express to the loved one you are caring for. It’s okay to withhold things because if your loved one has dementia s/he is already having difficulties processing normal everyday activities. There’s no need to get into a deep philosophical discussion or one in which you have to express what you are going through. Create a time and space for that to happen with a dear friend or a therapist.

If you feel guilty or are unsure of whether you’re doing enough ask yourself these questions:

  • Do you feel that you aren’t doing enough for your care recipient? Make a list of everything you do for the person you care for. Preparing a meal, shopping for groceries, driving to appointments, making a bed, doing laundry, making a phone call, sitting next to the person, even just giving a hug: the list adds up! You are doing a lot more than you think you are!
  • Are you guilty about your negative feelings? Resentment, anger, and grief are all normal. They are just feelings and they aren’t wrong. Feelings are complicated and you are entitled to them. You probably love the person you are caring for but the time you spend is precious and you might rather be outside gardening or hiking or traveling.
  • Do you feel bad about taking time for yourself? Don’t! If you don’t stay well, including eating and sleeping well, there’s a good chance you will get sick. And that is not going to help anyone! Please take some time for yourself. If you are a full-time caregiver, at least take a 15-minute walk every day. Get some respite care. Your local county social services department can most likely provide you with some options for help.
  • Are you feeling inadequate at a caregiver? The Alzheimer’s Association offers free classes on caregiving. “The Savvy Caregiver” is an excellent five-session class for family caregivers. It helps caregivers better understand the changes their loved ones are experiencing, and how to best provide individualized care for their loved ones throughout the progression of Alzheimer’s or dementia.
  • Tips for easing guilt
  • Ask yourself what is bothering you. Talk with a close friend who will not judge you, or with a professional therapist, clergyperson, spiritual teacher, or intuitive guide. Talk about your guilt until you feel your body release the tension that is stored in your muscles and cells.
  • Remember that you are human and not perfect. No one expects you to perform with absolute clarity and grace all the time.
  • You cannot control everything all the time. You are doing the best that you can with the information, strength, and inner resources that you have.
  • Have an “empty chair” dialogue by speaking out loud and pretending that your care partner is in the chair next to you. Express your feelings openly and wholeheartedly. Ask for forgiveness if you feel that you wronged your loved one in any way.
  • Write down your thoughts and feelings. Journaling is a wonderful, inexpensive way to release your concerns and worries on paper. It’s available when your therapist and best friend are not, and you can do it anywhere at your leisure.
  • Strong feelings of guilt, remorse, and grief will diminish over time.  If they continue to haunt you, seek professional help.

I’m still working–on forgiving myself for not being the perfect caregiver. I’m not overwhelmed by it, and I’ve recreated a wonderful, fulfilling life for myself. But I remember my therapist’s words, “You’re doing the best that you can.” I know I did, and that just has to be good enough.

The Alzheimer’s Association offers programs especially designed to benefit people caring for a family member or friend living with dementia by providing more understanding and tools to help navigate the journey. For more information contact 800-272-3900, alz.org.

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: TheCaregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

20 ways to make Zooming with a person who has dementia more meaningful

It’s often difficult to communicate in person with someone who has dementia. If that person lives at a distance, it’s even harder. Using zoom is a great option, especially if someone can assist with the mechanics. But if that person is hard of hearing, seeing, or has aphasia communicating on zoom becomes even more challenging.

Here are some ways that you can connect via zoom so that you feel less guilty about not being there or not being able to communicate the way you wish you could.

Even if your conversation is limited to a minute or two, the person on the other end will appreciate your taking the time to check in with them or to just say “hello.” Your loved one may not be able to speak or hear you, but just seeing your face will provide a bit of comfort.

  • Plan to eat together. Ask the person caring for your loved one to prepare something that you both especially like. Eat together and talk about the flavors, colors, and texture. This may be helpful if your loved one is having eating difficulties. Or, indulge in a special treat such as ice cream. This can be an opportunity to reminisce about going out for ice cream. What are your favorite flavors and where is/was your favorite ice cream parlor?
  • Hold up meaningful photos to the zoom screen. Don’t use words like “remember when. . . .” Instead, talk about the people in the photos and the special events where they were taken. Or talk about what those people are doing now, what they’ve done or where they live, etc.
  • Include your pet, if you have one. Dogs and cats contribute feelings of warmth and may elicit memories that your loved one had if they cared for a pet.
  • If your loved one is still engaged in a hobby such as knitting, fishing, quilting, or woodworking, show some of the items that they used or still use. If they painted a picture that you’ve hung in your house, display it on the screen and talk about how much you like it and why etc. If you both knit, plan a knitting session.
  • Does your loved one enjoy gardening? Bring in a pot of petunias or whatever you have growing in the garden, and talk about the colors, the smells, what you enjoy about gardening, and what they have enjoyed.
  • Do you have a hummingbird feeder hanging on the back porch? Show it on your zoom screen if you have a laptop or tablet.
  • If your loved one played an instrument, or if you play an instrument, use the time to play a recording or the actual instrument.
  • Children love to perform, especially on zoom. Have your child dance, sing or do acrobatics for your loved one. If you don’t have any kids, borrow a neighbor’s. It’ll bring cheer to everyone.
  • If your loved one can hear well, maybe they would enjoy being read to. A poem, an aphorism, a joke, a proverb, a short tale–or even a list of the funny things that kids say–may evoke a smile or chuckle.
  • Do you and your loved one share a love for fashion and jewelry? If they’ve gifted you jewelry, wear it while you’re on zoom and talk about how much you’ve appreciated it throughout the years.
  • If you both like to draw or paint, arrange with the caregiver to provide your loved one with the materials to create something while you’re on zoom together. Choose to create your own piece or not.
  • If you have a second digital device, take your loved one on a tour of a country, city, or art museum.
  • Did your loved one enjoy birding or identifying wildflowers? Find an app on your phone or tablet for birds, flowers, etc., and hold it up to the zoom screen. Some of these apps even contain bird songs.
  • Talk about a trip that you’re planning or have recently gone on. Describe it with sensory images using colors, smells, and sounds. What was the highlight of the trip?
  • Do some simple chair exercises together.
  • Find a copy of their local or hometown newspaper and pick out an event or interesting news item to share.
  • It’s been suggested that instead of looking straight into the camera, it’s better to turn your body sideways to the screen into a supportive stance. Supposedly it opens the other person’s visual field because you’re no longer the dominating object on their screen, and also reduces the otherwise excessive amount of eye contact.https://news.stanford.edu/2021/02/23/four-causes-zoom-fatigue-solutions/
  • Repeat or rephrase the last few words that your loved one says. Their last words can help them keep a fluid conversation. This lets the other person know that you heard what they were saying and helps calm them if they’re in distress.
  • Offer compliments freely. “I like your hair” “You look so good today.” “You’ve always been so good at . . . .” This helps establish the connection and lets the person know they are appreciated.
  • Pray together if your loved one would enjoy that.

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: TheCaregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.